Chiari 1 malformation with CSF block?

[JoeyH]

I am a 17 year old male who was diagnosed with chiari malformation in January 2012. I had decompression surgery on January 30. After I had been released from the hospital, I didn't see any significant change, but of course,more than likely you won't days after brain surgery. By the way, this decompression was not invasive and I did not have
the dura cut and patched. Weeks later, I was still experiencing many symptoms; in fact, they had gotten worse over time. I consulted my neurosurgeon and he scheduled an MRI of my head, neck, and spine only to see if I had a syrinx. It is now late April and we receive the radiology report. It said that I had "a lack of CSF flow" which simply tells you that my decompression was unsuccessful as it is blocking the cerebrospinal fluid. A syrinx was not present. After consulting with another neurosurgeon, we scheduled surgery. I was decompressed on May, 4. The neurosurgeon said it was one of the worst cases and that I didn't have a pulsation in my brain. After the surgery, I felt great; however, my symptoms are coming back (severe headaches, ears ringing, eye pressure,dizziness, etc). I will be having another MRI for my 3 month post-op on July 30 and we will know the results on August, 6. I know I can't say much about having surgery again, but if I have restricted CSF flow, would you suggest it? Anything will be greatly appreciated and God Bless everyone out there battling the same thing!

--Joey

[JoeyH]

I did have a MRI for those listed above and they can be ruled out. The second doctor is not a chiari specialist and the patch was my own muscle from my neck. I also have a pineal cyst.. I don't know if it accounts for symptoms. On a daily basis I go to the gym; however, haven't gone since my second surgery. He wants me to wait until I'm all clear at the 3 month post op. Thank you for informing me that symptoms are part of the healing process!

[selmaS]

  Hi and welcome to the Chiari forum.

I know from what u said that u did not have a MRI to look for a syrinx in ur thoracic or lumbar spine...and that  could be an issue as could tethered cord, disk issues, ICP, POT, ehlers-danlos  u really do need these ruled out.

Do u know if the 2nd Dr was a chiari specialist? Did he check u for these other related issues?

And since u had the duraplasty for ur 2nd PFD do u know what patch type u had?

BTW- at the 3 month post op point many do have some symptoms return, this is part of the healing process, they should not be as bad as b4 surgery and should not last as long....

And what u do on a daily basis can have an affect....what activities have u been doing post op?

[Sexybare]

If you decide to send your info to specialist I see dr oro at the chiari care center. They do not charge to look at your mris. So its worth it. Then they call you and let you know what he thinks. Good luck, keep us updated

[JoeyH]

I did have a laminectomy as well. And I forgot to mention that the second surgery I had my dura opened. I don't have a Chiari specialist, but we will wait to see what the MRI says and go from there. Thank you so much!

[zygy2]

Hopefully a new MRI can help you get answers.  I felt great after my first surgery and then everything came back, it took me a long time to get a new MRI because it was not standard procedure but eventually they found the leak (pseudomeningocele).  Just making sure you have a good Dr. that listens will help greatly.  Hopefully you find answers and feel better very soon.

[Sexybare]

I had my first surgery last aug, 2011. And I to did not have my dura opened. I had craniotomy and laminectony only. I am scheduled for surgery with true chiari specialist for dura opening and plate and muscle repair. I have muscle damage where my bone was removed. So I hear ya. Not sure what the results hold for you, but do you have a true chiari specialist? If not you should seek one out for second opinion. You can send them cds of pre op and post op mris and they will let you know what they see.